AIP Stories of Recovery – January 2015

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“AIP Stories of Recovery” is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please email us through the contact form.

Meet David! David is a husband and father to two young sons. His health battle begins very suddenly, but he wastes no time finding answers. His before and after pictures say so much, but I think, like me, you’ll be astonished at what happened behind those photos.

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?My story begins January 10, 2014. Having always had perfect eyesight, I began having issues with my vision. January and February were a whirlwind journey through a multitude of doctor’s visits, MRIs, MRVs, spinal taps, specialist referrals, and seemingly endless labs. I was finally diagnosed with a blood clot in the right side of my head. More tests confirmed I was, indeed, Factor V heterozygous and had the MTHFR 677T homozygous genetic mutation. I was referred to a hematologist, who started me on the anti-platelet medication Plavix. A few weeks passed, and I appeared to be doing much better.

On March 20, a painful rash appeared on multiple parts of my body, starting over the joints of my fingers, wrists, ankles, and knees. I was admitted to the hospital later that night. I was given large doses of intravenous steroids and Benadryl, which seemingly made the rash and pain disappear. My inflammatory numbers were still off the chart; however, my doctor was unsure what might be causing it. I was discharged on March 22 with more oral steroids and an Epi-pen, should I go into anaphylactic shock. (Not the most assuring feeling.)

The join pain returned with a vengeance the afternoon of March 23. I was re-admitted through the ER that evening. I remember being in such pain that I couldn’t walk from triage to the treatment area or stand to give a urine sample. Even holding a cup of water was out of the question for me. I remember being lowered off the gurney and asked to step on a scale so that they could give me the proper dose of medications. With difficulty, I managed to make it onto the scale and hated what I saw – 226.8 pounds. Self-conscious about my weight, this further added salt to my wounds. I spent three agonizing days while waiting to see a rheumatologist, as he visited the hospital only once a week. I was receiving as much Solu-Medrol and Torodol as possible.

He ordered additional labs, which I thought would finally provide me with answers; I was wrong. He said he was convinced it was an autoimmune response and that I had several symptoms of Lupus (for which there was “no definitive test” – his words), but he dismissed it for me simply because I was male. He ordered more steroids and NSAIDs, and switched me from Plavix to aspirin just in case that was causing it.

Driven with the prospect of a life on steroids and pain, I began researching Lupus and other autoimmune diseases. I first stumbled across Mickey’s site, just as her cookbook was launching on Amazon. I dug into other resources like The Paleo Mom and Phoenix Helix, and thought, “I have nothing to lose by trying this.” I was ready to try just about anything. I ordered Mickey’s The Autoimmune Paleo Cookbook, a book that is still dear to my heart, as it was the starting point for my journey to healing.

A couple days later, I was released with more pain meds and steroids and told to set a follow up with the rheumatologist a month out. I told my wife about my research and how I was going to try the Autoimmune Protocol. She was seven months pregnant with our second child at the time, but I remember her helping me cook a lot in those early days and encouraging me along the way. It was a gradual improvement at first. At my follow up appointment with the rheumatologist, he was, at first, pleased with my progress – much lower signs of inflammation in my blood work and I had lost almost 20 pounds from when I was admitted to the hospital. When I told him about my lifestyle change, he dismissed that as the reason and wanted me to continue on oral steroids. He also set a new follow up appointment for another month away.

When the second appointment came around, I had lost even more weight and was finally starting to feel like myself. My joints were barely swollen at this point, and I could actually use my fingers. My inflammatory levels were almost normal and the rheumatologist advised me to further taper the steroids.

Flash forward a few months, and the weight continued to fall off. My friends started to notice and began to ask me about how “my sickness” was affecting my appetite. I had a very hard time convincing people that my transformation was a result of my healing diet and positive changes, not my illness.

Over the past eight months, I read many AIP blogs and Facebook accounts of those who were living the AIP lifestyle. I searched for new recipes and others to whom I could relate. Finally, I decided I should put myself out there, to tell my story and help encourage others who were in my shoes. I am now pain free (most days), over 70 pounds lighter than when I went into the hospital, and am able to keep up with my four-year-old son – as well as anyone can keep up with a four-year-old’s limitless supply of energy. God has blessed me with a second chance at life, and I am grateful for it. I still have my flare-ups – usually if I have been under too much stress or haven’t gotten enough sleep for a few days in a row. And, I have been unable to successfully reintroduce most foods (I miss coffee most of all, but can tolerate egg yolks in limited quantities on rare occasions), but my world has been opened beyond measure by the entire AIP community. It may not be a fix-all for everyone, but AIP has really changed my life.

Describe what your lowest point with your health journey was like?The lowest point for me was the night before the rheumatologist was to evaluate me [in the hospital]. That night, there was a two-hour period where I awoke in such pain that I could not press the call button for the nurse. I remember watching the clock on the wall across from my bed, praying (through my tears) that the CNA would be early in her rounds to check my vitals that night. She was not. When the RN finally came by, she saw how much pain I was in and asked why I didn’t call. I told her I simply couldn’t push the button. If it was possible, my tears flowed even more, because I knew I would finally be getting some relief. Morphine let me rest until I saw the rheumatologist the next morning.

What challenges influenced you to look for a solution? Basically, what was the tipping point?The fact that the rheumatologist was so dismissive of diagnosing me with something simply because I was male, was the challenge that influenced me to look for a solution. Add to that the fact he would rather have prescribed meds to me for a long period of years than be open to the idea that diet/lifestyle changes could play such an important role in healing.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?The rheumatologist wanted to keep me on steroids rather than look at other possible solutions. He completely dismissed the notion that diet and lifestyle changes could impact my well-being. I didn’t want to be on meds for the rest of my life, so I set out to discover what other options I had.

When you found the protocol what was your first indication that it was working?I played guitar, regularly, in our church band, and was scheduled to play two weeks after I was hospitalized. I had to take some time away from that after the hospitalization because the joints of my fingers wouldn’t allow me to form chords or strum. I put all my guitars away because I was so disappointed. I remember it was sometime in the second month of doing AIP that I thought I might actually be able to play again. I was only able to play for a few minutes that day, but it was that moment that made me realize how far I’d come.

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?True joy? Being able to find purple or Japanese sweet potatoes! But seriously, my family and friends mean so much to me! I went from expecting a baby, to the threat of having a blood clot move, to maybe losing my vision, to not being able to hold a cup of water – all in the course of a couple months. I remember typing a letter to my (then unborn) son, just in case I wasn’t around to see him be born. What it means just to see his smiling face! I also appreciate nature and a good night’s sleep a lot more now.

Angie Alt is part of the blogging duo behind Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with Celiac and other autoimmune diseases; one creative, nutritious meal at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She’s also a world traveler who has been medically evacuated from two foreign countries. Strategizing worst-case scenarios is now something of a hobby. She is a Certified Health Coach through the Institute for Integrative Nutrition and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol. You can also find her on Instagram.

15 comments

This is such an incredible and inspiring story. Crazy how things can change in such a short time… Thank you for sharing your story, David! I’m sure it will bring hope to so many. P.S. purple and Japanese sweet potatoes are worth their weight in gold, aren’t they? 😀

Wow, I am so happy for your amazing healing journey. I too have Lupus and have just ordered the book as well, have started on a number of food elimination and already noticing a big difference! All the best to David and thank you for sharing your story.

Thank you so much for sharing your story! It’s so disheartening to me that rheumatologists and doctors in general are so fast to dismiss US when WE are the ones that KNOW our bodies! You would think that WE of ALL PEOPLE would know when something wasn’t right. Bravo to you for advocating and educating yourself! I wish you continued health.

David, I remember the pain you describe, where the simplest task is suddenly impossible. You show that you don’t need a diagnosis to reclaim your health. Wishing you a lifetime of joy, playing with your children and strumming that guitar!

I’m glad to know your full story, David. It still shocks me how most autoimmune diagnoses are given (or not given). My celiac diagnosis (since I was already gluten free and going back on it for even a few days landed me in the hospital) was essentially a toss-up between celiac and lupus. Since more of my symptoms matched celiac, however, the doctors went with that. Sometimes I still wonder if it is lupus that I have (or both), but at the same time, after talking to many fellow celiacs, I am pretty confident that celiac is the correct diagnosis.But who really knows? The more AI people I meet, the more I see the enormous amount of crossover in symptoms and in the way the diseases present themselves. I finally learned to stop even caring about official diagnoses – especially when we know they can ALL be managed the same way with good success. Way to go for sharing your story. It will help many! – Bre’anna

[…] on how to treat the disease, including eating gin-soaked raisins or an autoimmune paleo diet. Anecdotal evidence suggests that avoiding inflammatory foods and eating a strictly autoimmune paleo diet can […]

An incredible story. David is looking good these days. It’s so sad that the medical community is so dismissive of any sort of dietary interventions. I think many docs are coming around, but very very slowly. I was never diagnosed with an autoimmune disease, but I was on my way for sure. My son was diagnosed with autism, and many of us warrior parents take an AIP type approach in treating their symptoms. Personally, I lost nearly 100 pounds following a simple paleo diet. I just shared my before and after photos on my most recent blog post. It’s not a before and after post though. Rather, my goal was to show people that anyone can change their diet. I had crazy bad eating habits before I got sick enough to want to change.

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